
Systemic Lupus Erythematosus
A complete guide for patients...
Systemic Lupus Erythematosus (SLE) is a systemic autoimmune diseases in which the body’s immune system attacks the healthy cells of ones own body.
What causes SLE?
The cause is unknown,but circulating Immune complexes is a classical feature of SLE. It may happen due to environmental triggers in a genetically predisposed individual.
What are the symptoms of SLE?
The common symptoms are:
- Fever
- Skin rashes (Butterfly rash on the face is classical)
- Photosensitivity
- Oral ulcers
- Significant hair loss
- Joint pain and swelling
What happens in SLE?
It is one of the autoimmune multi-system disease in which the immune system is unable to differentiate between non self (eg: organism) and self (one's own system). The major systems involved are brain, kidneys, blood vessels, heart, eyes, skin, joints etc.
Is SLE Curable?
SLE is an "incurable disease", just like diabetes and hypertension. But with the recent availablility of good treatment modalities, SLE has a very bright outlook as in diabetes and hypertension.
What are the available treatment options?
Majority are treated with steroids. Patients who are on steroids need not get frightened, as the actions and side effects are known to the doctor, hence can be monitored. The initial dosage of steroids is as high as 1mg/kg/day or more which is tapered slowly after about 2 to 3 months and later to a maintenance dose.
Caution: Premature tapering of steroids is dangerous, which may cause flare up of disease and ultimately,the patient will end up getting more steroids. So "Seek a trained Rheumatologist".
What is the common expected side effects of steroids?
- Skin changes like stretch marks
- Opacity of lens
- Increased blood pressure
- Increased blood sugar
- Low immunity leading to infections
- Thin bone and fracture risk
What are the other drugs given for SLE?
Along with steroids, Chloroquine or Hydroxychloroquine are given, which has a mild steroids sparing effect. These drugs prevent Nervous system disease relapse, thrombosis and infection. There are other drugs which are used in case of major organ involvement eg - Mycophenolate Mofetil, Azathioprine, Cyclophosphamide, Cyclosporin. These drugs also help in decreasing the steroid requirement.
Photosensitivity is a major problem especially in the Indian context ,hence patients should take adequate UV protection like using full sleeve clothings and adequate sunscreen application (SPF> 30)
Should the patients take the drugs over the counter (OTC)?
No! Steroids and pain killers (NSAIDs) have long term side effects. Tapering and monitoring should be done to minimise these effects. Hence care should be taken in not taking drugs over the counter.
How frequently the Rheumatologist should be consulted?
After diagnosis, follow up should be made every month. Once stable the patient should visit the Rheumatologist at least once in 3 months. An eye check is a must once in 12 months. Any intercurrent infection should be treated promptly.
Is there a role for diet restrictions?
"No diet can cause or no diet can cure SLE". But fish can be taken often ,as it contains Omega 3 fatty acids, which has an anti-inflammatory effect and also prevents cardiac complications.
Is SLE hereditary?
Most systemic autoimmune diseases have multifactorial etiology and there is a likelyhood of the offsprings getting SLE or any other connective tissue disorders. But it doesn't follow any inheritance pattern and often not predictable.
What are the concerns with pregnancy?
Pregnancy flares up the disease leading to a higher risk of miscarriages due to the presence of Anti-phospholipid antibodies.Pregnancy in SLE need special care as there is risk to the life of both mother and fetus, if not monitored well. Indiscriminate use of OC pills (oral contraceptive pills) may increase the risk of blood clotting tendency in LUPUS patients.
Is there any preventive drug for an SLE patient who becomes pregnant?
No clear evidence in that;directing close monitoring with the Rheumatologist/ Immunologist and Obstetrician is the best option. Blood thinners are also used under supervision.
What are the patient and care givers responsibilities?
As a patients, one should follow the prescription as advised and go for regular checkups as advised by your Rheumatologist. Maintain good healthy eating habits and make necessary lifestyle modifications. Contact your doctor in case of any abnormal symptoms.
As a care giver, one should be always give emotional, physical support to a LUPUS patient, many patients may suffer from depression in the absence of family support. Lupus treatment is usually prolonged and at times costly in the initial phase hence good financial support and planning needs to be done.
Content Credit: Parts of this article are sourced from Christian Medical College, Vellore's patient information leaflets.